Fighting Dystonia, Chronic Lyme Disease & EDS Type 3… any questions?

Posts tagged ‘body’

Since I became ill last summer, I have tried to be careful in everything I do. My body has limits and I have to learn to respect that. However it’s hard to keep within the limits when they keep changing, and when outside factors alter them constantly. I often tend to step over the boundaries, simply because I know that if I don’t test them now and then, I’ll never know what my body’s full potential is. Though I must admit I also do this simply due to craving the freedom my body once had.

A couple of weeks ago the college phoned me and asked if I would like to attend the Clothes Show Live 2013 at the NEC in Birmingham. After a discussion with mum about if this would be beyond my bodies limitations I decided that I would go. I was extremely nervous as the furthest I have been from mum since I got ill is when I ride, and that’s not far at all. If something happened, I knew that I would most likely wake up in a strange hospital before mum could get there. A situation I did not want to end up in. Thankfully all my worries were for nothing.

I had two of my learning support staff with me to make sure I was safe and to push me around. It was a truly fantastic experience that I am incredibly thankful for. The college had booked a coach that had access for my wheelchair in, and for the main runway show we had the best seats! Other than the odd twitch and my right knee paralyzing on and off, which I’m used to now, my body was perfect. I think I have shopped for this years christmas presents and everyone’s birthday presents for next year!

I expected my body to have a complete meltdown today, but other than being very achy it’s behaved well. I have managed to go to the opticians and have a couple of Coke’s out in town with my family, without any issues.

As I mentioned in yesterdays blog a couple of days ago I developed a new spasm. Its rather painful in the neck and gets a lot worse when I am tired.
I have spent the majority of today with my webcam on so that I capture this new spasm to show you all.
If anyone else experiences anything like this and has tips on what helps them please leave a comment as I’d love to hear your views.

I, personally, find its words to ring true. As much as we wish life was perfect, nobody’s life is. Everyone has their own struggles in life, be it financial, domestic, illness, loss etc. At some point in life we will ask ourselves, why me?! Why am I having to go through this, I can’t deal with it! If you have not asked yourself this yet, then I am sorry to inform you that eventually you will. However when it comes to that point in time, when you are asking why me? That is when you must remember that if you were not strong enough to deal with it, then you would not be going through it. The experience may make you feel like it will never get better, and that is the moment you must remember that it will get better and that whatever you have had to struggle through, will make you a better and even stronger person at the end of it.

I have asked myself, why me, so many times recently. The question normally arises when I am going through a particularly bad spasm or am in a lot of pain. However, each time the pain stops and I relax, I can think more clearly, and I know that I would much rather go through this than see a member of my family, or anyone else go through it. I know that I am strong enough to deal with it and that’s why it is me who has Dystonia.

It is up to us to make the best out of a bad situation. For me, I have decided that instead of curling up in a ball and letting myself become a ‘sufferer’, I shall instead be an advocate for the condition. I shall try my best to make a difference! You never know, I might!

So if you ever are thinking, Why me?! Remember the above quote and know that if you were not strong enough for this life, you would not have been given it!

Having Dystonia means that no day will be the same as any other. Some days may be a good day and others are not so good. This is a fact I have readily accepted. However what I was not prepared for was the spasms that would give everyone around me a shock yet provide amusement simultaneously.

The other day I went to put a knife away and all of a sudden the little dystonia alien decided to act up. Before anyone could help me, the spasm had caused the knife to be flung out of hand, clattering on the ground at the other side of the room. This incident could be one to fear, knife throwing after all is rather dangerous, however all of us could not help ourselves, we all burst into laughter. It was such a random and sudden incident that was shocking yet amusing. Then the next day when my body decided to spasm I sent a plastic cup full of juice flying across the room, making a mess of myself and the floor, but again none of us could help ourselves we had to laugh.

The way I see it is that you have to very clear cut options with dystonia, you can either be angry and become reclusive and isolate yourself so as to avoid potentially embarrassing situations or you can accept that this is what your body is doing, accept the fact you will have good and bad days, yet be able to laugh at the situation, find the positive side to life. After all it is widely known that laughter is the best medicine.

Official Blogger for DMFR Canada

dystonia and me

I'm 24 years old and a student. I suffer from Generalised Dystonia and Non Epileptic Seizures. I have set up my blog to help spread awarness and bring light to this condition. This blog will be full of all my experiences that happen during my dystonia journey, from natterings, musings, moans, laughs, highs and lows. :-) It will be a little bit of everything